Living within my flames

Will Paige ever walk again? That is something we hold on to every second of every day but the answer is we just don’t know. We long to watch her dance outside her flames and who knows miracles can happen. We know that what ever happens we’ll all be together to help.

As part of Paige’s program we have to keep things as normal as possible so we don’t fuss around her and we tend to step back and let her do things the way she has learnt to do them. When it was first confirmed I used to wake up to Paige’s whimpering cries (1/2 awake and 1/2 asleep) between 0030-0330 every night but now Paige has trained herself that turning over in bed or moving her legs hurts so she doesn’t do it and I have trained myself to listen but not get up when she stirs at night. Sometimes you just have to be hard on yourself.

If we had one wish it would be that all of the CRPS sufferers had a cure for this horrible illness.

One day pain free for Paige would be a life time of happiness for her.

Everyday we battle the unknown and everyday we have the love and support of amazing people around us

Thank you to our families and friends for being so supportive and taking the time to read about Paige’s illness and for trying to understand it. Without their love and support we wouldn’t be as strong as we are today. We are so blessed as a family unit to have wonderful families and friends like them all in our lives.

CRPS can trigger anywhere in the body at anytime so for sufferers it is like living with a ticking time bomb. There needs to be more information out there and more awareness about how crippling this illness is not only to the ones that suffer but to loved ones too.

CRPS has the highest suicide rate of all illnesses and rates at 46.5/50.00 on the Mc Gill pain scale (the scale doctors use to measure pain) that is higher than natural childbirth, cancer, phantom limb pain and the amputation of a digit. It has been reported that it can effect children as young as 3 but normally it effects women over the age of 40 but like many illnesses it doesn’t do sexism or ageism it can effect anyone of any age, race and sex.

Our fight against the flames continues.